Pierced!

Yep...we did it.

Got Taylor's ears pierced today.

I have to admit I was somewhat hesitant to go through with it, and nervous about her reaction, but when I thought about everything that our little sweetheart has endured, ear piercing seemed pretty minor.

And it was!

She was amazing, cried for less than 10 seconds. Before we headed out we put some emla cream on Taylor's earlobes (thank you for the tip Chantel). We took her to Merle Norman. First they marked a little dot on each earlobe, then they put the tiny earrings into the guns. Two ladies drew their weapons, counted to three, and fired in unison. In a split second Taylor's ears were pierced! It happened so fast Francis practically missed recording it!

Holidays are Joyful

What a whirlwind!

Much to our surprise, Marissa actually slept a little longer than usual on Christmas morning! Maybe that was her present to us! She was very excited to head downstairs to see if Santa brought her a dollhouse like she was hoping for...and yes, he delivered. It's bigger than she is! And he brought Taylor a new highchair, exactly what she needed! We opened all our gifts and captured the aftermath of wrapping paper piled high! We have been so very blessed and spoiled, Christmas was very good to us. We have been enjoying lots of rest and relaxation and family time together over the holidays, Francis has been home since Christmas Eve and doesn't go back to work until the 4th of January. It's been so nice having him home.

 

Christmas Fever

Hard to believe that Christmas is already here! We've been in Christmas mode full force around here and enjoying every minute of it. We took the girls for the token Santa pictures. We had Grandad take our family Christmas photo for our cards. Marissa was a great participant this year...she helped me make Christmas cards, she decorated a gingerbread house, she helped decorate cookies for Santa, she did some crafts, and she had her preschool Christmas concert! Fun times. I was in a baking frenzy the past few days, we are well stocked with Christmas cookies. Better late than never! I made some special cookies to take to the hospital that said 'love from taylor' and even some dog cookies for Buddy!

Marissa and Taylor are snug in their beds. The cookies, milk and Kahlua are out for Santa, and carrots for the reindeer. The excitement of Christmas morning just hours away!

Tearful Goodbye

Had a very emotional night tonight. We said a tearful goodbye to Lana, Taylor's developmental aide for the past year and a half. It was a hard decision to make but our time slot wasn't working for Taylor anymore. Lana's been working with her in the evenings since September, Taylor was just getting too tired and wasn't working as hard. Lana has really become part of our family...helping, working with, and loving our sweet Taylor every day. We are so sad to say goodbye. Taylor has made some steady gains over the past year and a half, and Lana has been a big part of that. We will never forget what you have done for our Supergirl, thank you for loving her.

xoxo

Feeding Troubles

Pool group at the hospital today. That's always fun. Good to see our friends. Nice to see Taylor happily kick her legs and make a splash.

From there we went for a feeding assessment. Feeding has not been going overly well. She will not take the bottle very often, and the times she does take it, she hasn't taken more than 30 millilitres. That's 2 tablespoons. Not very much. Getting discouraged. Tried some pureed solids today as well. She took a couple spoons, managed it okay, but not great. She's doing a bit of gagging, even with the bottle.

The recommendation is to continue trialing the thickened formula and the pureed foods to maintain and practice feeding skills. Watch Taylor's cues for her readiness for spoon/bottle (opening her mouth). Try to drop food at the front of her mouth.

The therapists are curious if Taylor's spitting up and increased discomfort as mealtimes progress might be due to problems further down the digestive tract, and that perhaps following up with GI might be appropriate.

Tough Questions

I was sitting in Starbucks a few days ago. Taylor was in her wheelchair hooked up to a tube feed. The woman sitting next to us suddenly asked me, "What's wrong with her?". Had it been anybody else, I think I would have fired back "What's wrong with YOU?" But I didn't. She her own special needs and told me she had cerebral palsy. One special soul curious about another. I answered her questions and I wasn't at all put off by the first time someone in public has asked me what was wrong with my sweet Taylor.

But today brought the question I knew was coming.

We were all getting into the van and out of nowhere, Marissa asked, "When is Taylor going to walk and grow up?"

I felt my heart drop. I knew this was coming, it was just a matter of time.

I told her that Taylor is special, that she might not walk and talk and do things that other kids do but we really hope that she does, and that she is going to need lots of help from all of us. When she asked "why" we said that it's because of the seizures and the 'boo boo' in Taylor's brain. She was satisfied with that answer.

I am not. My heart feels very heavy.

Tis the Season

Christmas parties underway and already two under our belts!

First up, last weekend was the PennWest Children's Christmas Party. Craft table, play area, and of course Santa himself. It was craziness...loads of kids, not enough tables, sugar overload, Santa excitement...YIKES!!!

Today was the CNIB Children's Holiday Party. The girls both enjoyed themselves at this one. For Marissa it was cookie decorating, craft table, fishing game, drum circle, and playing the piano with her partner-in-crime Liam. Taylor had some time on a wonderful sensory blanket, enjoyed the music in the drum circle beside her friend Annika, and got to play in some water with Nessie, the musical water toy.

Sisterly Love

It's been a nice low key week around here. Back into a somewhat normal routine (whatever normal is anyways!).

Our Infant Team therapists from the hospital came and did a home visit this week. All three of them came, the Occupational Therapist, the Physiotherapist and the Speech Language Pathologist. They worked with Taylor's own toys and sensory items to do some fine motor stuff. Jeanette adjusted Taylor's standing frame, she has grown so much since we got it that it needed several adjustments. Then we had a little feeding session so they could watch Taylor have some thickened fluid by bottle. She drank a wee bit and they were pleased with how she managed it. Good good!

Marissa's morning cuddle time in Taylor's crib has resumed since we've been home, it is so very sweet to listen on the baby monitor as Marissa climbs into the crib, says good morning to Taylor, kisses her and talks to her. Warms my heart to wake up to that. This morning she got dressed first, did her own hair, and even brought her own pillow into the crib with her. She covered Taylor up with a blanket and put some stuffed animals around her head. So so cute.

Hope

Well...today was the big day. We managed to make it to the hospital on time despite the crappy roads and morning rush hour traffic. Barely!

FEES...Fibreoptic Endoscopic Evaluation of Swallowing

Poor Taylor, with the NG tube already in one nostril, the doctor shoved another tube down her other nostril, a tube with a camera on the tip. We then watched Taylor drink a bit of bottle on the screen. It was very interesting to see what actually happens back there when you are breathing vs. swallowing. I could see the "pooling" and "bridging of the airway" that they have been talking to me about where some of the milk pools and hovers over the airway instead of going down the esophagus when Taylor swallows. I could finally see what was actually happening when Taylor makes the gurgling sounds as she feeds. Despite the gurgling and pooling of the fluids around the airway, the doctor did not see an aspiration occur.

Great news. However just because it didn't happen during the 7 minutes of this feeding study doesn't mean it couldn't happen. So the recommendation by the OT is still to thicken the fluids to give Taylor better control, and that we can go ahead and start introducing oral feeds back into the mix.

What a relief! If we can get her eating and drinking again...safely...then at some point we'll be able to get RID of the NG tube. This is promising.

Next on the schedule today was the Neurologist. Dr. Bello was pleased to hear that the feeding study was positive. We're done with the Vigabatrin wean. He wants to continue the Phenobarbitol. We'll stay on the Phenobarbitol. Dr. Bello had dangled a little carrot in front of me a few weeks ago one afternoon while we were in the hospital. There's a drug called Levadopa, primarily used on Parkinson's patients, that he has used in certain cases like Taylor's. He wants to trial Taylor on a low dose. Because of her severe hypotonia (low tone), because of her severe intractable seizures (that do not respond to treatment), and because of her choreic movements (involuntary, abnormal, spastic movements that are not purposeful). He has treated a small number of similar cases over the years with l-dopa and has seen significant improvement in development and significant improvement in seizure control. Seems like a miracle drug, I'm in. Now that Taylor is stable, he has given the go ahead for us to start. The neurology pharmacist is going to put together a schedule for increasing the dose slowly over four weeks. He also needs to work with the dietician on the mixing instructions of this drug, because it has a carbohydrate content, and that will affect the ketogenic diet. It's never simple!

With today's happenings, I have hope.

Back in the Groove

Well, it's been a week and a half since we came home, boy time flies! I was settling into a nasty cold when we were discharged, so I was pretty much out of commission last week, finally feeling better now thank goodness.

Before we left the hospital the OT dropped in to see how things were going with Taylor. We hadn't been working on the thickened fluids by mouth because she was so congested from her cold that she couldn't breathe with a bottle in her mouth. The OT thought that it was better to play it safe for the next couple of weeks before the FEES study to continue with 100% tube feeds. So that's what we've been doing since we got home, and tomorrow is the big day, FEES study (Fiberoptic Endoscopic Evaluation of Swallowing) at 8:30am. Of course the city is hit with snow and bad roads right now, so it's going to be an adventure to get there on time in the middle of the morning rush hour. Sigh.

Since we got home Marissa has been quite interested in the whole tube feeding process. She told me that she wants to be my special helper, what a sweetheart. She likes to press the buttons on the pump. She knows how to turn it off when the feed is done. And she knows how to restart it when it beeps with a flow error. She gets quite annoyed when I beat her to it, she likes to do it herself. She's also very interested in flushing the tube after a feed finishes. We need to flush the line with water from a syringe after each feed, so Marissa is right in there wanting to help. She puts the syringe in the tube and flushes the water through, and she's very proud of herself every time she does it. I first let her do it last week one day. We were sitting at the dinner table while Taylor's feed was pumping through, and Marissa asked, "Mommy, is it time for me to milk Taylor?" Trying not to laugh I reminded her that it's called flushing Taylor's tube. Funny girl.

Going to call it a night now, early start in the morning to make it to Children's on time. Will update once we have news from the FEES study. Hopefully good news.

Snug In Our Own Beds

To say we're happy to be home is an understatement! What a blessing to finally be home with Supergirl, 25 sleeps at the hospital is a record indeed, a record we hope to never break!

I think the happiest person in our house though is Marissa. She's been missing her little sister like crazy (and Mommy too). She's got loads of hugs and squeezes for the both of us and it sure feels good to be back under the same roof as a family.

Oh love!

Do I Hear Discharge?!!!

Yes I do, that's what the doc said when she came in this morning! Believe it or not I actually asked to stay one more night. Taylor's had a couple good days throughout this admission and something new would creep up. I would just feel more comfortable having one more good day under our belts before going home. The doc was okay with that so tonight is our last sleepover at Hotel Hospital! Taylor had a great day today. No issues. Making her usual noises. Moving around. Kicking. All good stuff. I feel much better tonight about leaving in the morning. I think Supergirl is ready to blast outta here and get back to some normalcy.

Two Sickies :-(

So, we didn't have the FEES study yesterday. The charge nurse called the ENT clinic first thing and asked when we could re-schedule as an outpatient. We were able to get an appointment on the 18th, so we decided to go with that. It's not too long to wait, Taylor should be all cleared up by then of her terrible cold, and then we can be more certain that whatever the result is, that it wasn't hindered by her congestion.

Taylor's eyes are looking much better today so the antibiotic drops are obviously helping. They were still red all the way around yesterday, but had stopped gooping up. Today the red circles have greatly improved. She hasn't had any fevers and hasn't needed any oxygen. All good. Her stuffiness seems better, but she still has an awful cough.

Unfortunately I'm sick now too, that was just a matter of time. Spent most of today in bed while the nurse took care of all Taylor's feedings. So grateful for that. Francis and Marissa came for a little while and brought me some Tylenol cold medicine, that always helps. With Francis playing Mom at home with Marissa, I never know what kind of getup she's going to show up in! Today she arrived in sparkly gold shoes, a summer dress, and a Halloween hairband. And I'm pretty sure her hair hadn't been combed. Too funny.

I think they may say we can go home tomorrow, but we'll see. I want to go home so badly, but I also want to feel comfortable with it. Taylor's had a couple decent days through this hospitalization, then something new creeps up. I'd hate to get home and have something else happen.

Pretty uneventful day really, other than a blowout of mass proportions this evening. It went all the way up her back and into her hair. OMG! The nurse put her right into the tub, while I changed her bedding. I actually threw out the sleeper!!!

Marissa brought a stuffed turtle from home for me (so sweet), I put it in Taylor's crib and she spent quite some time checking it out.

Two Steps Back...

It seems like we keep going one step forward, then two steps back.

Just after I finished the blog last night Taylor started to have to work really hard to breathe. She was really congested, her respirations were really fast and had indrawing in her chest. She also had another fever. The nurse paged a doctor. She was given back to back ventolin through a nebulizer, and they put the oxygen prongs in her nose. Given the recurring fevers, and the increased work of breathing, the doctors were concerned about aspiration pneumonia. They wanted to put her on antibiotics right away as a precaution. Because of the ketogenic diet there are specific antibiotics that have no carbohydrate content. Because it was after 1am at this point they didn't have access to it, and the emergency room didn't have it, so we were to wait until the morning. Poor Taylor was beyond tired at this point, she still hadn't fallen asleep and it was approaching 2am. They just kept re-examining her and asking the nurses to suction her. After she was breathing better I was getting more and more frustrated that the doctor kept coming back and prodding at her. I told her if she wanted Taylor to have a good night that she needed to be left alone or her seizures were going to get out of hand from sleep deprivation.

God bless Nora our nurse, she left Taylor alone after that, she didn't do the suctioning through the night that the doctor wanted. That would surely have put poor Taylor over the edge. And she slept peacefully once they left her alone.

This morning she got a dose of the antibiotics. And poor Taylor looked like she had been in a fight and lost. Poor little muffin has really goopy eyes and a crusty nose. And she developed red circles all around her eyes. Poor thing looks terrible and has had this tired sad cry off and on today. Swabs were ordered of her eyes.

When the docs came in for rounds they had decided to put the antibiotics on hold until they could confirm the need for it. There was also a mixup with the ENT clinic regarding the FEES study, it's scheduled for tomorrow morning at 8:30am, not today. The pediatrician is a bit concerned about whether or not it's a good idea to proceed with the study right now when Taylor is so sick. Would it be a true picture of the way Taylor handles her feeds? She said she'd give it some thought through the day and we'd talk more about it later.

This afternoon Taylor was sent down for another chest x-ray. I'm kicking myself for not bringing the camera down with me, they did it in the most interesting contraption called a Piggostat. I found some pictures online of what it looked like...

I talked with Dr. Vomeiro later in the day, the chest x-ray was fine, no indication of pneumonia. We decided that it's probably best not to do the FEES study tomorrow, but we'll wait and see in the morning how Taylor is in case she has some remarkable turnaround. The swabs taken from Taylor's eyes this morning are growing a bacteria, so she does have an eye infection in both eyes. As well as an ear infection in both ears. It's quite common for a secondary infection to manifest after one is already present. So antibiotics have been started, and drops for her eyes. Poor sweetheart looks like a train wreck.

Dr. Vomeiro is going to call the ENT clinic first thing in the morning to ask when we could re-book the FEES study as an outpatient. If it's going to be too far down the road, then we'll go ahead and do it tomorrow. But if they can get us in in a reasonable time frame then we'll re-schedule it. I have been quite anxious to get these feeding answers, but the test is pretty invasive and uncomfortable under the best of circumstances, so to subject Taylor to that right now seems unfair.

If we do not do the FEES study, then they will keep Taylor here until she turns towards recovery, maintains her oxygen sats and stops spiking fevers. Then they will discharge us and we will maintain the NG feeds at home until our re-scheduled FEES study appointment.

So we shall see what transpires in the morning.